Caregiving I: Hawking
This article first appeared in the Minden Times on April 12, 2023.
I was railing at the heavens like an insane King Lear about how informal (unpaid) caregivers are invisible and underappreciated when I discovered that StatsCan, in a reasoned and evidence-based voice, made a similar point in a 2022 study based on 2018 (so pre-Covid) data. Let me give them their moment in the storm:
Informal caregiving can give people who help friends or family a sense of well-being, lower the economic burden for families, and reduce costs to governments and other organizations associated with health services and institutionalization. In addition, care recipients benefit from this support when they can remain at home and maintain a more positive quality of life.
Even though informal caregiving is generally considered beneficial because of the savings achieved and the well-being of the care recipients, taking on such responsibilities can have consequences for caregivers. These include the impacts on physical and mental health, participation in the labour force, pressure on personal finances, and reduced time available for other activities. Women are more likely than men to experience difficulties as a result of their caregiving duties, particularly as women represent the majority of caregivers in Canada. While caregivers spend substantial amounts of time providing critical support, it is largely invisible to others (except in its absence), typically lacks social recognition, and goes unpaid and unmeasured.
The consequences of caregiving was illustrated in technicolour in a 2021 documentary, Can You Hear Me? (on Gem), about Steven Hawking (1942-2018). He went through a lot of caregivers between age 21, when he was diagnosed with motor neurone disease (aka ALS, Lou Gehrig’s disease) and 76, when he died. That included, in the informal category, two wives and a daughter. Jane and Steven met the year before he was diagnosed, became engaged a year into the two years he was expected to live, and married about the time he was scheduled to die. Jane says, a bit plaintively, that caregiving was longer and harder than she had anticipated. Two children arrived and Steven became famous. They began integrating helpers into the household, including, 12 years into the marriage, Jonathon Hellyer, a widowed organist. ‘Feelings’ developed, Wikipedia says, but the relationship was ‘platonic for a long time’, and Steven was okay with it as long as Jane continued to love him. Jane vociferously insists that Stephen is the father of their third child, born a couple of years after Jonathon moved in. At the 20-year mark in the marriage, Stephen requires a tracheostomy and round-the-clock nursing is instituted. He becomes ‘close’ with one of these nurses, Elaine, boisterous and adventurous, the antithesis of Jane. Five years later, he dumps Jane for Elaine. Ten years later, there is concern about spousal abuse, which is denied, but he and Elaine divorce. Lucy, his daughter then aged 36, becomes his intellectual partner and personal caregiver for the last 12 years of his life.
Stephen is famous for proving that black holes in space could emit radiation and would eventually exhaust their energy and evaporate -- which I find, morbidly perhaps, a fascinating parallel to his illness. I envision his caregivers as campers seeking the warmth and inscrutability of a roaring bonfire but vulnerable to flying sparks. Objects at the edge of a black hole are frozen in time; I wonder if that is how Jane felt.
Most caregiving situations have less drama and profile than Steven Hawking’s; in fact, I suspect they are usually dull and drab and hidden in the shadows of daily life, comprised of a million necessary mundane tasks, the disciplined putting of one foot ahead of the other to go the distance – without, often, having a good idea of what that distance is. Not being goal oriented – or not being able to articulate or embrace that goal – makes the path seem longer, meaningless, worthless.
Informal caregiving is an integral part of life; it is what makes life possible, most notably at the beginning and end of life, but, I would argue, at all points in between – it is, I think, what is lacking when loneliness sets in. It needs to be honored for the essential element that it is. Seen. Respected. Supported. Celebrated. And since we live in Mark Carney’s market society, monetarily valued, given a price tag, remunerated.
We honour Steven Hawking’s life and contribution. We should equally honour that of Jane and Elaine and Lucy.
